How Celiac Disease Runs in The Family

When Rory Teitelbaum reveals the number of people in her immediate family who have celiac disease, many can’t believe what they’re hearing. “Five out of six?” they ask. “You’ve got to be kidding.”

But Teitelbaum, 42, a New York City mother of four and fierce full-time homemaker, couldn’t be more serious. She and three of her four children all have the autoimmune condition, in which the body cannot process gluten. And in an unusual twist of fate, her husband, Bruce, is the fifth family member with the condition.

“We have to be so on top of things,” Rory says of daily life. “But we’ve made it into a positive thing. While drumming into the kids why we can’t have gluten and that we are responsible for what we put in our bodies, we’ve worked to make them feel special. And they’ve become good at asking questions and dealing with things like peer pressure.”

Life has progressed to the point the family can sagely debate the merits of one gluten-free bread or ice cream brand over another, or dissect the deliciousness of the gluten-free French toast at the hotel near their east-side Manhattan home. It’s not uncommon for 5-year-old foodie Sophie to archly warn that a cookie doesn’t “look” gluten-free or for Emma, 15, to call her parents to say she is with friends at a crepe place and, “they have ones that I can eat!”

Rory, Bruce and their children are well aware of the havoc that gluten, a protein in wheat, barley and rye products, can cause in the body. When the immune system of a person with celiac disease detects the presence if gluten, it leaps into defensive action, inflaming the lining of the small intestine and damaging tiny, finger-like projections called villi that are vital to the absorption of nutrients into the bloodstream.

The common symptoms of the condition are diverse: from abdominal cramps and bloating to chronic diarrhea, irritability in children, brain fog and even infertility.

The Teitelbaums are a perfect example of why specialists such as Dr. Daniel Leffler, a gastroenterologist at Beth Israel Deaconess Medical Center in Boston, make a point of asking all patients who have just been diagnosed with celiac disease about who else is in their family.

“It’s my first question, just after: ‘How are you feeling?’” Leffler says in an interview. “Because celiac disease is genetic and U.S. doctors, especially, don’t have a great record of diagnosing it. If it’s left undiagnosed, the consequences can be catastrophic, from growth and health problems to bone density issues.”

Since each parent comes from their own gene pool, it is quite uncommon for both parents to have the condition. But in his practice, Leffler does frequently see multiple members of the same family with celiac disease – one parent, say, and two or three kids, a grandparent and/or a sibling, or any combination thereof.

If you or any member of your family does have celiac disease, Leffler stresses that screening of other relatives should be done regularly because the odds of them having or developing the condition have now shot up: one in 22 for immediate family members and one in 39 for people such as aunts, cousins and grandparents.